Re: We Got a Script for !

[Guest guest]

Congrats on getting the prescription. Sorry about your insurance. we have BCBS and had the same exclusion.

I am glad the group has been so helpful. I know it was for me. My 2003 STARband grad will be 8 in January and I have belonged to the group since 2002.

Please keep us posted.

Angie

We Got a Script for !

Just thought I'd post an update on 's appointment with the neurologist yesterday, especially since a few of you asked for one. Sorry in advance if this seems to detailed! The appt. was a little overwhelming; I thought we'd just go in and get right to the head shape. Instead, the neurologist (who we know a little on a personal level--he and his family go to the same church as us and I know his wife fairly well) wanted to thoroughly check on all kinds of things I hadn't considered. I appreciate that he was thorough, but it's sometimes alarming to have bring up other possibilities. He ordered a blood test to rule out any chromosomal abnormalities (this might be more to do w/ an epicanthal fold he noticed than with the plagio) and a CAT scan to confirm that the skull hasn't fused at all. He said he's nearly 100% sure that it hasn't, but wants to be certain. I was under the impression that most doctors could tell this w/out a CAT scan, but I don't mind confirming. It just means will have to be sedated, and I don't love the idea of that, but we'll do it, and we need to do it before he's banded. The neurologist confirmed the plagio diagnosis, brought up and then ruled out a dozen other scary things, then said he'd refer us to a neurosurgeon who would probably recommend cranial banding. As long as the CAT scan confirms that the skull hasn't fused, why do I need a neurosurgeon?! I felt sure that this would delay us too much, so I pressed the doctor. We told him we agreed that would need banding, and that we wanted to start right away. He said he hasn't ever prescribed banding,even though he agrees it's often needed; he just refers to the neurosurgeon so that the neurosurgeon can be the one to coordinate the process. (Lesson learned: it's probably best to go straight to a pediatric neurosurgeon, not a pediatric neurologist). I thought that seemed an unnecessary delay. I told him we already had an appointment with CT in Southern California next week for an eval and then possibly the DSI, and that they are specialists who ONLY do cranial banding (i.e., they know more about severity of the plagio, chance at success with the band, etc. than he--or likely the neurosurgeon--does). He said, "great, what do you need?" I told him we needed a prescription for the band, and he wrote it for us. I felt like we FINALLY had a victory with a doctor! I think I've learned my lesson not to just always go w/ a doctor's plan but to actively participate in, and sometimes sway, the development of the plan. We feel a lot of peace about our decision to move forward with a band for , and now I'm relieved that we have the doctor's go-ahead. Now we just need to get in for a CAT scan by Monday, which is really pushing it, but as a friend of mine (who has several high needs children and deals with medical stuff all the time) keeps reminding me, you have to be "kindly tenacious" to get what your kids need.On the insurance issue, we sent in a letter for pre-determination but have already been told over the phone that if there's an exclusion for cranial banding written into our policy, then there's no way around it--no way, no how. So we're moving forward without waiting on the insurance denial. We may try asking the employer to request an override of the exclusion, but I don't hold out much hope on that front.We go to Cranial Tech in Pasadena on Tuesday. It's a 6 hour drive, so we plan to fly for appointments (just an hour flight, and you can get round trip tickets for around $100.) Travel expenses for medical reasons can be taken out of a flexible spending account, so even though we won't be able to pay for the helmet out of our FSA (we've exhausted our 2009 FSA $ and will be incurring the cost in Dec. of this year), we'll at least be able to put $ in there for 2010 to cover the travel we'll be doing. We have a lot of family in Southern California and will already be down visiting them for probably 3 times during what I am estimating will be 's course of treatment (though we don't know for sure of course.) So that cuts down on the number of flights he and I will have to take. If you think I'm crazy for traveling so far, please don't tell me now! I just feel really good about putting in the experienced hands at CT.The best thing that's happened to me in the past week, amidst my devastation at realizing 's condition and my awful guilt at not having taken action sooner, has been receiving the wonderful support of so many on this forum who took time to share their experiences, opinions, and recommendations. Without all that help, I'd still be spinning my wheels, and we'd be waiting a month or two just to get into the neurosurgeon's office. So a huge THANK YOU to all you great plagio parents!Mom to , 8 months old

[Guest guest]

It's funny because we are changing insurance plans in January. Even though I know that we won't be banding anymore, I find myself checking policies regarding cranial orthosis. I did find one policy tha specifically says that it covers Docband devises. Most of them just don't say anything about it in their general papers. I guess you find out about exclusions when you call.

At the time that was banded, we had just barely discontinued her double coverage on Carefirst (BCBS). When I read their papers, it makes it look like it would be covered so I had been bummed about it all of this time. Now, I found out from my coworker that they didn't cover her son's STARband, but she is going to appeal anyway.

, mom to , 27 months

STARband grad May 11, 2009

Chiro and CST

land

We Got a Script for !

Just thought I'd post an update on 's appointment with the neurologist yesterday, especially since a few of you asked for one. Sorry in advance if this seems to detailed! The appt. was a little overwhelming; I thought we'd just go in and get right to the head shape. Instead, the neurologist (who we know a little on a personal level--he and his family go to the same church as us and I know his wife fairly well) wanted to thoroughly check on all kinds of things I hadn't considered. I appreciate that he was thorough, but it's sometimes alarming to have bring up other possibilities. He ordered a blood test to rule out any chromosomal abnormalities (this might be more to do w/ an epicanthal fold he noticed than with the plagio) and a CAT scan to confirm that the skull hasn't fused at all. He said he's nearly 100% sure that it hasn't, but wants to be certain. I was under the impression that most doctors could tell this w/out a CAT scan, but I don't mind confirming. It just means will have to be sedated, and I don't love the idea of that, but we'll do it, and we need to do it before he's banded. The neurologist confirmed the plagio diagnosis, brought up and then ruled out a dozen other scary things, then said he'd refer us to a neurosurgeon who would probably recommend cranial banding. As long as the CAT scan confirms that the skull hasn't fused, why do I need a neurosurgeon?! I felt sure that this would delay us too much, so I pressed the doctor. We told him we agreed that would need banding, and that we wanted to start right away. He said he hasn't ever prescribed banding,even though he agrees it's often needed; he just refers to the neurosurgeon so that the neurosurgeon can be the one to coordinate the process. (Lesson learned: it's probably best to go straight to a pediatric neurosurgeon, not a pediatric neurologist). I thought that seemed an unnecessary delay. I told him we already had an appointment with CT in Southern California next week for an eval and then possibly the DSI, and that they are specialists who ONLY do cranial banding (i.e., they know more about severity of the plagio, chance at success with the band, etc. than he--or likely the neurosurgeon--does). He said, "great, what do you need?" I told him we needed a prescription for the band, and he wrote it for us. I felt like we FINALLY had a victory with a doctor! I think I've learned my lesson not to just always go w/ a doctor's plan but to actively participate in, and sometimes sway, the development of the plan. We feel a lot of peace about our decision to move forward with a band for , and now I'm relieved that we have the doctor's go-ahead. Now we just need to get in for a CAT scan by Monday, which is really pushing it, but as a friend of mine (who has several high needs children and deals with medical stuff all the time) keeps reminding me, you have to be "kindly tenacious" to get what your kids need.On the insurance issue, we sent in a letter for pre-determination but have already been told over the phone that if there's an exclusion for cranial banding written into our policy, then there's no way around it--no way, no how. So we're moving forward without waiting on the insurance denial. We may try asking the employer to request an override of the exclusion, but I don't hold out much hope on that front.We go to Cranial Tech in Pasadena on Tuesday. It's a 6 hour drive, so we plan to fly for appointments (just an hour flight, and you can get round trip tickets for around $100.) Travel expenses for medical reasons can be taken out of a flexible spending account, so even though we won't be able to pay for the helmet out of our FSA (we've exhausted our 2009 FSA $ and will be incurring the cost in Dec. of this year), we'll at least be able to put $ in there for 2010 to cover the travel we'll be doing. We have a lot of family in Southern California and will already be down visiting them for probably 3 times during what I am estimating will be 's course of treatment (though we don't know for sure of course.) So that cuts down on the number of flights he and I will have to take. If you think I'm crazy for traveling so far, please don't tell me now! I just feel really good about putting in the experienced hands at CT.The best thing that's happened to me in the past week, amidst my devastation at realizing 's condition and my awful guilt at not having taken action sooner, has been receiving the wonderful support of so many on this forum who took time to share their experiences, opinions, and recommendations. Without all that help, I'd still be spinning my wheels, and we'd be waiting a month or two just to get into the neurosurgeon's office. So a huge THANK YOU to all you great plagio parents!Mom to , 8 months old